Jay Turbes-s
Forum Replies Created
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David, ( @dec01 )
All that I’ve read says that you can continue as long as your dr. thinks there’s a benefit. There are recent studies that seem to show that Esbriet combined with Ofev is also more beneficial than Esbriet alone (can’t speak to whether Ofev benefits by adding Esbriet). If your forced vital capacity doesn’t deteriorate too far, Esbriet is probably still a good bet for the duration.
If, however, your doctor(s) decide you’re not benefitting any longer then, like Milady here, they can rationalize your not staying on Esbriet based on their interpretation of the law of diminishing returns. Or they make a sudden reversal of your original diagnosis in favor of ‘discovering’ mitigating circumstances such as suddenly (and contrary to the premier pulmonologists at Nat. Jewish here in CO) finding interstitial-related workings of rheumatoid factor and perhaps (most likely in our case) wishing to avoid the continued high cost of Esbriet to your HMO. Esbriet’s street price is about $USD 140K per year whereas prednisone is about the cost of a bag of M&Ms. If that sounds cynical, you get my drift…
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Bedside in hospice.
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Six months or more after FDA approval before Esbriet was prescribed by Kaiser/CO.
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Being totally new to the IPF adventure four years ago, we knew nothing about pulmonary rehab. back then. It was three years later and thanks to the Pulmonary Fibrosis Foundation’s website, the European IPF Rareconnect world forum and others when we finally realized that part and parcel of IPF care was rehab.
We asked Kaiser/CO about this thing called pulmonary rehab and they said, “Well, yeah, if you want to go elsewhere for it and pay for it outside of your Medicare Advantage. We don’t offer it, but we’ll be happy to send you a list of places in Denver…”. One, of course, was National Jewish Hospital — duh.
Kaiser/CO to the rescue, as always.
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Milady’s Esbriet regimen had virtually no ill side effects and also seemed to keep her appetite in check. The result was a welcome loss of weight as one beneficial side effect. Then a year ago, her cost-cutting HMO (Kaiser-P.) decided to put her on prednisone instead of Esriet, mumbling something about “misdiagnosis” — in spite of the premier respiratory clinic, National Jewish, affirming her IPF. Since the change to prednisone, her appetite has increased and so has her weight…not a welcome result. Prednisone is apparently known to cause weight gain.
Ofev was never a contender, and I’m not sure why. But with her good results with Esbriet, we never questioned that. I’ve tried to retune her diet to more green and clucky things and fewer Blizzards…but only time will tell if she gets back to losing weight again.
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Like Suzanne, Milady here in Denver would have occasional nosebleeds, with or now without the Esbriet. Besides being low humidity here (usually…it’s been pretty soggy of late) the O2 is quite drying. And adding the humidifier bottle to the concentrator just makes things messy and clogs the line with condensation. So she just uses saline nasal spray and muddles on.
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There is one recruiting trial on Clinical Trials.gov for BG00011:
https://clinicaltrials.gov/ct2/results?cond=&term=BG00011&cntry=&state=&city=&dist=
Note that application can be made through any of the Clinical Trials.gov listings, or at least there’s info. on how one proceeds with the application.
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…and after attempting to apply to participate in the GLPG 1690 trial here at National Jewish and being informed that we would need a referral from our regular pulmonologist at Kaiser/CO, who has refused to give it. She cited her opinion that Kaiser’s original diagnosis of IPF was a misdiagnosis and so Milady is not a candidate — this in spite of a previous diagnosis by National Jewish that Milady indeed has IPF.
Builds confidence in one’s caregiver, eh? This is the first time for us that a trial required a doctor’s referral; we were in a previous trial at National Jewish where IPF was verified. No such approval was required.
I can’t help but conclude that if you’re victim of an HMO like Kaiser/CO, God help you…
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ClinicalTrials.gov lists the GLPG 1690 trials in two specific locations:
https://clinicaltrials.gov/ct2/results?cond=&term=GLPG+1690&cntry=&state=&city=&dist=
— there are others, but not related specifically to IPF treatment.
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We have a “tri-wheeler” similar to this one:
— but ours doesn’t fold up as nicely.
J. in CO
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Charlene, Katie, et al
I’m a caregiver and not afflicted like Milady here. She and I don’t talk about what she’s dealing with daily, or inevitably. And that’s a shame. But I’m too much of a coward to bring it up. When the one or two people I know ask, as they always do, how we’re doing, I lie and say “great”. Or in more truthful moments, “…about the same, thanks”.
Rarely, like on holidays and birthdays that we both know may be the last, we pretend there’ll be more and sometimes we cry. I try feebly to imagine her terror — I know mine, which is the inevitable and dreaded loneliness. There is no amount or type of counseling I can imagine that will help with either of those. For myself I tried that as a way to deal with my role as caregiver/mate, and after the verbal disgorging and letting it all out, I didn’t feel a bit better. I was just embarrassed and even more angry at the godless unfairness of such a wonderful person being beset with this unearned disease.
And no IPF (or whatever they’re claiming she now has) support group can do much else other than be a constant reminder — like the lady who broached the matter with you, Charlene — of what you wanted a respite from, at least for a short time. You didn’t want or need that and neither would we. The inevitable damned disease will still be there for her and the looming loneliness for me. Family and friends are all gone and it’s just us two.
But every new day is a blessing, particularly when it’s cough-free, even if it misleads us about what’s coming. We’ll take it! It’s what keeps us going.
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Charlene,
It’s sad that this person “dumped” on you about her husband’s IPF battles (and her own agony). By now, you must have encountered similar chance encounters, and I would surmise that they all are either attempting to be sympathetic or think they’re establishing some sort of rapport. Few of us have much on which to base our daily lives of dealing with a loved one — or our own — who has this kind of affliction. As self-serving as she was, she probably had no previous experience dealing with such trials, had kept it bottled up, and then along came you!
It’s unfortunate that it was in a venue where you hoped to free yourself of the daily trials of your own IPF, particularly when you purposely sought out something you thought was totally “alien” and apart from the daily norm. For many of the same reasons you mentioned, I brush off enquiries into my lady’s IPF status and don’t bring it up with others — whether personally or on forums such as this one. Many of us of advanced years have no one to turn to. Friends/family are gone, and a lot of what’s said/written are platitudes that don’t help a bit facing what’s next. It just rubs salt in festering sores, so I don’t mention it outside the home and only when she broaches here as well. What’s the use?
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Charlene…
The Cleveland Clinic has a number of caregiver-related articles there. Is there a particular one you had in mind?
Thanx…
J. in CO
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We tried unreconstituted/organic pineapple juice…no noticeable change.
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Here in CO, we’ve had a few power failures that made us depend on the backup liquid O2 reservoir. But more often, our concentrator has simply given up the ghost as recently as last week, though that isn’t a common occurrence. I know that liquid O2 isn’t an option in a lot of places; when I asked our Kaiser-P. contracted supplier, theoretically, what to do if either the power or concentrator failed without liquid O2 backup (there was a fear that it would be discontinued) I was told, “Take any portable liquid O2 containers you can top off and head for the nearest emergency room…we can get to you within four hours to replace the concentrator”. Last week it took them 12 hours. At 6 lpm, our liquid O2 reservoir is probably good for a couple of days before it would need a refill.
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Is this WEI treatment related to the Astragaloside IV (ASV) Chinese herbal derivative you reported on earlier?
Cheers…
J.
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Marta,
These IFP info. sources range in price from $0 to US$250. Perhaps making your own list with links to the actual items would be helpful. Bionews tends to list these things over multiple web pages and not provide links to much of what they cite.
1. “Breathing Should Never Be Hard Work” by Robert Davidson (https://www.amazon.com/Breathing-Should-Never-Hard-Work/dp/1460209796)
This true story is about one man’s fight against the disease, and how he didn’t let it stop him living his life. It’s an interesting read about someone’s real experience living with PF.
2. “Pulmonary Fibrosis” by Sem H. Phan (https://www.amazon.ca/Pulmonary-Fibrosis-Sem-H-Phan/dp/0824788516)
This book is full of medical- and science-based information about the disease, studies into clinical practice and concepts on the pathogenesis of pulmonary fibrosis.3. “Basic and Clinical Aspects of Pulmonary Fibrosis” by Tamotsu Takishima (https://www.amazon.com/Basic-Clinical-Aspects-Pulmonary-Fibrosis/dp/0849389275)
Various experts contributed to this book to provide detailed information regarding studies and the development of new therapies for pulmonary fibrosis.4. “Advances in Pulmonary Fibrosis” by John Simpson and Ann Millar (https://books.google.com/books/about/Advances_in_Pulmonary_Fibrosis.html?id=P8FbY7Bz_CkC)
This book is a collection of informative papers about pulmonary fibrosis, which summarize the latest medical developments.5. “Interstitial Lung Disease” by Marvin I Schwarz (https://www.amazon.com/Interstitial-Lung-Disease-Marvin-Schwartz/dp/1607950243)
This book includes a complete overview of interstitial lung diseases, along with thorough patient evaluations. There are helpful tables and figures to complement the information provided, focusing on the effects of the diseases on both adults and children.Cheers!
J.
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Charlene,
I mentioned earlier that Patient Services Inc. is a possible source of help.
As for Esbriet, the originator Genentech have some sort of financial relief, or so their info. I sent for/got recently hints at it (three years after my charge started on Esbriet, since apparently Kaiser never informed them of being in the “club”). Ironically, Kaiser hounded us two years ago to find “…some sort of financial assistance” but without any hint as to who/where. Luckily, we found Patient Services.
As for the “street price”, review the PFN info from 2014 when Esbriet/Ofev hit the streets:
— but I know factually that it’s gone up at least US$10K since then.
As for veterans’ assistance, one gets that only if one is either a US federal retiree with military service, a “career” service type or a “war-time/conflict” vet. I was in for five pre-Vietnam peacetime years and my eventual benefit will be $100 burial. Basta. Otherwise, I get nothing. Thankfully, I myself don’t need any help so far.
J.
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Re: cutting the cost by cutting the cord to Esbriet…thanks to Kaiser/CO!
After a two-fold diagnosis of IPF over the past four years, both by Kaiser and the preeminent lung gurus at National Jewish here in Denver, Kaiser, thanks to the recent uptick in her rheumatoid arthritis (RA) symptoms and markers, suddenly decided that my charge no longer has IPF! Instead, she’s got “ILD” (of which IPF is a “sub-disease” — go figure!).
The pros: she is no longer on $$$$Esbriet (last info. I saw, ca. US$112,000 per anno) and instead is on ¢¢¢¢prednisone (last copay: $5!) and something that looks like yellow matte finish paint called Mepron/atovaquone (again, $5 copay). The prednisone is going down well and has relieved some relief from the RA. The other pro, of which we see only two at this stage: Kaiser and the blessed Patient Services Inc. are off the hook for the cost of Esbriet.
The other stuff, Mepron, we don’t know what to expect, but orders are orders. When I picked up the Mepron look-alike the pharma. clerk asked, “Oh, does she have malaria??” I said, “Nope, just a touch of beri beri with dengue fever…”. The humor escaped her.
The cons: in spite of a double diagnosis of IPF by the leading lung disease center, by simply using the “comorbidity” of RA with an ILD (pick one….), our frugal HMO has an “out” for prescribing (and paying for) Esbriet. Never mind that the confirmed IPF diagnosis predated the RA by three years! And when I asked Kaiser how they could be sure that the Esbriet was no longer needed, an NP said, “Well, after all, the Esbriet hasn’t cured her IPF, has it? So it must be something else…”.
When has Esbriet EVER BEEN TOUTED as a cure for IPF???
The real doctor was unavailable for comment and we were running low on Lox, a scarce commodity in some remote Kaiser outposts, so we needed to head home.
The battle drags on…sometimes against the affliction but mostly within the ranks of those who should be allies. But there is a way, questionable though it might be, for avoiding $$$$med’s.
Cheers?
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Wow! Mr. Sherman, I’d say you’re in the right place in Ben Wheeler based on what you’re getting. My charge here in Denver under Kaiser “care” is summoned to her pulmonologist once a year, the same for the GP/NP also for her “wellness” (ahem) exam, and was not offered rehab until her IFP had “progressed” to where she was two years into things and determined it was of little or no value. She gets no other support or interest from Kaiser/CO.
As for a support group, there are a couple but she doesn’t travel well and also takes little solace in the idea of immersing herself any deeper in the misery so has foregone that.
I think we should have moved to Ben Wheeler!
J. in CO
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Charlene,
When we learned about rehab. and that it was recommended IPF treatment, it was already the third year after diagnosis and she felt that it was futile to get involved. I’m sure that had it been offered right from the get-go she would have done it (or anything!) to fight IPF. Three years later, she had resigned herself to the inevitable. We were focused on making an issue of getting Esbriet or Ofev and that alone took almost a year before Kaiser reluctantly agreed to the Esbriet treatment.
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Hi, Charlene,
We’ve contacted National Jewish directly and found that a referral from our Kaiser doctor is not required. That was what I assumed from the clinicaltrials.gov info.It was interesting to hear what they had to say about Kaiser/CO — we apparently aren’t the first Kaiser defectors, and their feedback ‘twarn’t pretty!
But there’s more than one way to defoliate a feline, I guess 🙂 !
All the best to you, too!
J. in CO
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Charlene,
Milady’s nosebleeds aren’t that frequent, so she uses the saline spray mostly to keep congestion in check and to relieve any dryness from the O2. She’s also tried applying peanut oil (?) that she read was good in one of her metaphysical books…mine is not to reason why, just provide support 🙂
J.
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Dunc,
Yes, we did the “half full” thing with the distilled water too. I think because Milady is upstairs and the concentrator is down in the family room with mucho tubing in between, it still results in being messy. Coping with the dryness and preventing scabs with veggie oils seems to be more “do-able” than hassling with that bottle.
Cheers!
J. in CO